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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Getting desperate...do these symptoms sound familiar? Need diagnosis ideas.


12-04-2013, 12:34 PM   #1
kjblock
 
Join Date: Dec 2013
Location: Ithaca, New York
Getting desperate...do these symptoms sound familiar? Need diagnosis ideas.

New here, but I've been suffering with some issues since 2007. Let me describe my symptoms first and then tell you what has been investigated so far. I'm a 45 year old woman. In 2007, I had my first ever massive episode of symptoms. I had been having a lot of gas, and burping some really bad tasting burps (yuck) for awhile. I had a day where I was experiencing that, then later had horrible diarrhea, then vomiting, plus I got massive hives and turned bright red from head to toe. My lips and inside my mouth started swelling and I went to the ER, where I then had low blood pressure (too low to even register on the monitor). They pumped me full of IV benadryl and some other stuff, sent me home with an epi pen, and sent me to my own doctor.

I got taken off lisinopril (which can cause angioedema) and then was tested for every food allergy they could think of. All was negative. They never figured it out, and hoped that maybe it was a one time thing.

I kept having trouble with vomiting and nighttime diarrhea and occasionally hives along with the GI stuff. I moved to a new state, and ended up seeing a GI who tested me for celiac (my mom had been diagnosed with it) and did an endoscopy and colonoscopy. No celiac then, but they diagnosed me with GERD and hiatal hernia and put me on omemprazole.

The vomiting eased up, and the nighttime diarrhea improved somewhat. I would still get GI upset and hives at times, once when cleaning mold in windows and once when attending a book sale in a building full of musty dusty old books.

The reactions are generally delayed, in the middle of the night, and always include diarrhea, and sometimes the hives and redness and low blood pressure.

Now, over the past year or so, the diarrhea has gotten worse, and it happens anytime during the day now, not just at night. I've been tested at an allergist's in the last month or so, for food allergies, tryptase, serotonin and some other stuff, to rule out carcinoid syndrome, mastocytosis, lupus, etc. Every test has been normal so far. I was tested again for celiac last week and haven't gotten the results for that yet.

When I had my endoscopy and colonoscopy about five years ago, they didn't do any special staining to look for mast cells, as far as I know. I've been doing a lot of reading about that lately, plus histamine intolerance. The allergist said even though my tryptase was normal, that can miss mast cells in the intestines (she also mentioned eosinophils).

I am getting a bit desparate since it is starting to really affect my ability to do my job and my kids' activities. Since some of my reactions are so severe, I worry that they can't figure out what is causing them. I am actually seeing a GI this afternoon and am hopeful she will have some ideas. I am just wondering if my symptoms sound like anything anyone else experiences.

As an aside, I take omemprazole and I also have type 2 diabetes and rosacea. On a recent occasion I felt a reaction coming on and took some loratidine. It seemed to hold off the GI problems and also relieved a muscle knot in my shoulder that I've had for about a year (it came back but the temp relief was nice). I am thinking this gives a clue that it perhaps IS mast cell related. I am just desperately searching for some idea as to what might be going on with me. I just had a pretty bad reaction on Thanksgiving Day (and had one on Thanksgiving a few years ago)--benadryl seemed to stop it fortunately, so I didn't have to go to the ER.

Thanks so much, I am very happy to have found this group.
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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Getting desperate...do these symptoms sound familiar? Need diagnosis ideas.
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